Postural Tachycardia Syndrome (PoTS) and Ehlers-Danlos Syndrome (EDS)
At Venters solicitors we are committed to helping the vulnerable and those in need. We specialise in advocacy which putting it simply is “speaking up for a particular cause.”
As part of our commitment, we want to “speak up” and raise awareness about two medical conditions about which there is so little known but which often “go hand in hand.”
Postural Tachycardia Syndrome (PoTS) and Ehlers-Danlos Syndrome (EDS)
The daughter of June Venters QC, Senior and Managing Partner of this Practice has been recently diagnosed with these syndromes. This has been a life changing experience for her daughter and her family. June has dedicated her career to “crusading” for Justice but achieving Justice is not just limited to the law and in this situation extends to the world of medicine.
Having first-hand experience of just how difficult her daughter’s journey has been to access the right and necessary medical diagnosis and treatment, June is determined to raise awareness of what can be debilitating and life changing conditions, if left undiagnosed and untreated.
We hope you will take a moment to read about these conditions and that you will sign the petition, the link for which is below.
Thank you for your time and consideration.
1. POSTURAL TACHYCARDIA SYNDROME (PoTS)
What Is PoTS?
Normally when you sit or stand up, gravity pulls some of your blood down to your abdomen area, hands and feet.
In response, your blood vessels quickly narrow and your heart rate increases slightly to maintain blood flow to the heart and brain and prevent blood pressure dropping.
This is all done without needing to think about it, by the autonomic nervous system – the nervous system in charge of automatic body functions.
In PoTS the autonomic nervous system, does not work properly. There’s a drop in blood supply to the heart and the brain when you become upright and the heart races to compensate for this. Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity.
PoTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down). Symptoms include palpitations, light-headedness, fatigue, sweating, nausea, fainting and headaches and are associated with a persistent increase in heart rate from the lying to upright position.
Imagine having your heart rate going up to 170 and more on a regular basis throughout the day and your blood pressure dropping below 60 throughout the day?
Imagine how frightening that must be?
What Is The Effect Of PoTS
This is a life altering and debilitating health condition. Just as with mental health illness, whilst this can be severely disabling, it isn’t visible.
PoTS is a chronic illness which means it is usually lifelong.
Standing Up For PoTS
Despite its seriousness it is a condition about which so little is known and that includes among medical practitioners. It is for that reason raising awareness about PoTS syndrome is so important.
Venters solicitors is standing up for PoTS by raising awareness – the more people who know about this condition the more we will be able to support the many who so often suffer in silence.
Visit website: www.potsuk.org
2. Ehlers-Danlos Syndrome (EDS)
Ehlers-Danlos Syndromes (ES) are a group of rare inherited conditions and are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top end of a spectrum called Hypermobility Spectrum Disorder (HSD). Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
Hypermobile EDS symptoms:
- Joint hypermobility
- Loose, unstable joints that dislocate easily
- Joint pain and clicking joints
- Extreme tiredness (fatigue)
- Skin that bruises easily
- Digestive problems
- Dizziness and an increased heart rate after standing up
- Problems with bladder control
- Problems with internal organs
An independent enquiry is being called for because so little is known about this condition. Patients can be accused of fabricating illness and are treated as psychiatric patients. Thus, their condition goes untreated and their health, both physical and mental, often deteriorates.
With the right diagnosis and the right help and support, this condition can be managed and sufferers can lead a fulfilling life. With the wrong diagnosis and no help or support, they can become extremely unwell, suffer excruciating pain, be unable to live an independent existence and can even become suicidal.
Please take a moment to read the petition, which is calling for an inquiry into the treatment of Ehlers Danlos patients and its comorbidities and please sign.
Your signature will take but a moment but could facilitate a life-changing situation for those who currently often suffer in silence.
Visit website: www.ehlers-danlos.org
